Behind the Scenes with JDRF: How The Special Diabetes Program Won Renewal

It was 3 a.m. and the JDRF advocacy staff was wide awake and in the Washington DC office, working the phones, following the action and pacing the floors, awaiting what would be a successful passage of a two year, $300 million renewal of the Special Diabetes Program, a cornerstone program that, via the NIH, has funded and continues to fund some of the most important research going on in diabetes care and cure.

In homes across the nation, those with a passion for a cure and better treatments for diabetes were checking C-Span, scanning social media and crossing some fingers and toes as they awaited what would, just before dawn, be a victory in funding for diabetes research.

“It was an unbelievable relief and victory,” said Cynthia Rice, JDRF’s Senior VP of Advocacy and Policy, of the pre-dawn vote that secured the funding for two more years. “Congress was up all night, and so was our team.”

Team is the operative word here, she said, of the success realized in an extremely challenging time to secure project funding on Capitol Hill. The 18-month, sometimes frustrating process came to an excellent conclusion, she said, not just because of her staff and lead volunteers, but because of the tens of thousands of people who care about the Special Diabetes Program, who took action, over and over, across the nation.

“We had so many families and folks across the country post not just our action alerts, but ones they created themselves,” she said. It was common each day of the months – and particularly the final weeks and days—coming up to the votes, to see social media shares of families in action living life with Type 1, of children and adults meeting with Senators and Congressmen (with taglines such as “I asked you to promise to remember me. Now is the time,). That swell of grass roots activity – -a JDRF staple – deserves much of the credit for the success, she said.

JDRF drew on their long-admired multi pronged approach: using the voices of the diabetes community coupled with public statements from the research community as well as the entertainment industry to present a harmonious voice pushing for renewal.

While the SDP has been in place since the late 1990’s and has funded over $2 billion in research since that time, the renewal this time around was no sure thing. Challenges included a new administration finding its way in Washington, to similarly funded programs that – like the SDP – failed to win renewal in the fall, to two government shut downs in the final weeks working toward approval; those and more made the process tricky, time consuming and at some points for some, worrisome.

But JDRF, and all of us in the diabetes community, prevailed.

“It was particularly difficult for us this time around for reasons that had nothing to do with the program itself,” Rice said.

In the end, Rice said, credit goes to those advocates in the field, as well as the four key legislators who head up the Diabetes Caucus: Sen. Jeanne Shaheen (D-NH), who has a granddaughter with Type 1, Sen. Susan Collins (R-ME) who has no personal connection to Type 1 but who takes seriously a promise she made to a young boy with Type 1 nearly two decades ago, Rep. Diana DeGette (D-CO), who has a daughter with Type 1, and Rep. Tom Reed (R-NY) who has a son with Type 1.

“We have to give them great kudos,” Rice said. The four worked hard for months prior and almost non-stop in the final days to secure the bipartisan support for the renewal from their fellow legislators. “They were true stalwarts in this effort,” Rice said.

It was a challenge for them, too, with bills approved in the House, then going to the Senate, then tweaked and going back to the House. “This was some very tricky legislation,” Rice said.

JDRF chose to push hard for the two-year renewal, and not to make things easier for them. Multiple year renewals allow researchers to put forth proposals that are more long term.  Researchers will tell you, in fact, it’s vital.

“It’s incredibly important that this be renewed as a multi year program” said Maggie Morris Fears, PhD, Associate Professor and diabetes researcher at Eastern Virginia Medical School. “We cannot carry out science one year at a time.” Fears, who used social media to rally researchers and friends all over to call out for SDP Support, said that the fact that SDP money helped create the Human Islet Research Network, a key program that creates teamwork in diabetes research, is reason enough alone to celebrate the victory. Of course, there are many more examples, like Trialnet.

“We [researchers] were very anxious about this renewal,’ said Fears. “This is really good news.”

With the program’s renewal, the NIH will now begin the process of not just allowing current research to continue, but also requesting proposals for new projects. “We know there are some really important ones out there in need of funding, so we are quite happy,” said Rice. “This really does help to continue to attract and keep really good and important research.”

The approval keeps the program going until September 30, 2019. That means that while all who care can breathe a sigh of relief they must also dig deep and continue the work to renew it once again. First up? Thanking all in Congress, said Rice. JDRF currently has a link for all to click and send a simple thank you to Senators and Congressmen for approving the renewal.

Next up? Getting geared up for the next renewal. But first, Rice said, her team is going to “grab some sleep” and then begin the next chapter. “The work is not done until the cure is found.”

Moira McCarthy
Moira McCarthy

Moira McCarthy was pursuing her dream career in active sports journalism when her young daughter was diagnosed with Type 1 Diabetes in 1997. While she continued on that route, writing for the New York Times Sports and Leisure Division, Snow Country Magazine, Ski Magazine and becoming a daily newspaper sports columnist for the Boston Herald, she also began dedicating much of her life to diabetes advocacy and education.

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